The mum of a three-year-old boy from Bristol, diagnosed with the same rare condition as Katie Price's son Harvey, is hopeful her son will have a similarly independent life when he grows up. Mary Jane James, who is a full-time carer for her son, Marley Thorpe, and a mum of three, said she didn't realise Katie Price's son had the same condition as her own son, until she saw an interview with them on TV.
She said: "It popped up on This Morning and they were talking about his condition and then as soon as they said it I remember thinking that I hadn't known that was the condition Harvey had. So it did kind of put me on a level with Katie, knowing that I wasn't alone and that there were other people like Marley out there.
"I have found others online but they mostly live in America which is a shame as I hoped to meet up with other mums, but I've not found any in the UK so far, so I'd love for anyone who reads this to maybe come forward and we can talk."
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Mary was 22 when she gave birth to her son Marley in Plymouth and, over a year later, she was being told he had an incredibly rare condition called Septo-Optic-Dysplasia, which meant he had no midline part of his brain and his optic nerves and eyes were very under developed, resulting in him being blind. When she was told of her son's diagnosis, Mary said it impacted her mentally, emotionally and physically.
She said: "These things happen to other people, they don't happen to me. That's what was going through my mind when I was told - you never think it's going to happen to you when somebody turns around and tells you your child is disabled with no vision."
Marley, who recently celebrated his third birthday, was born a happy and healthy baby but, when he turned three months old, Mary noticed that he wasn't looking at her or tracking her movements. She brought it up in conversation with her health visitor, who immediately referred him to the eye hospital where, at first, Marley was diagnosed with involuntary eye movement.
After further investigation, Marley went for an MRI scan at 13 months old which found that he had the rare condition which only affects one in 10,000 people. Though Mary said she had been worried that his condition could have been far worse.
She said: "They can tell at your 20 week scan but I don't think they scanned as hard as they should have, because they didn't pick it up in the 20-week scan. The doctors also said that there was a very small possibility that he would never talk, or walk or have any quality of life and yet he does, so that's a good thing."
"Marley's funny, he's cheeky, he's got such a sense of humour and he runs around like there's no tomorrow. He loves dinosaurs, he loves the park, he's just like any other little boy."
"Marley will probably have to go to a school for special needs children and right now attends a specialist nursery. We're actually having a meeting soon about what's going to happen for him in the future."
Mary's other children - two daughters - are aged seven and one and her eldest daughter's relationship with Marley, Mary says, is "absolutely brilliant". She added: "They're best friends and she's the first to explain to people that he can't see properly and that's why he carries a 'magic stick' with him and she loves it, she loves telling people and explaining his condition to her friends."
Marley has his own habilitation specialist who will be with him now until he's an independent adult and she has been providing Marley with his training, teaching him how to use his cane and she sees him twice a week. Mary also said that he may one day have his own guide dog.
She told Bristol Live: "I've been working with Guide Dogs UK at the moment and they've been absolutely fantastic, so I'd definitely like to thank them. In fact, the people at Guide Dogs couldn't believe how quickly Marley had picked up the cane and he's one of the youngest they've ever seen to just go for it."
Mary hopes that Marley's future will see him live a life that's "as independent as possible and as normal as possible". She said: "Just so he doesn't think that he's different from others and that he has got the same opportunity as everybody else."
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